Grandparents camp outside Buckhead PGA Superstore to help fund treatment for grandson with rare terminal disease

ATLANTA — Nate is blowing out five candles this week.

He loves being outside. He chases his brothers around the yard. He explores, runs, laughs, all the things you would expect from a busy 5-year-old.

But last April, Nate was diagnosed with PKAN, short for Pantothenate Kinase-Associated Neurodegeneration, a rare and progressive neurological disorder. There is currently no cure.

As Nate grows, the disease progresses too. PKAN affects his muscles, his movement, and even his ability to speak. His family knows the road ahead will require increasing levels of support, from mobility assistance to specialized medical equipment.

So this weekend, his grandparents are taking action in a very visible way.

Gregory and Tara Scott have pitched a tent outside the new PGA Superstore opening in Buckhead. They are camping out to be first in line for giveaways and merchandise they can use in an upcoming golf tournament fundraiser for Nate.

The goal of that tournament is ambitious: to fully fund the PKAN Gene Therapy Project through the Loving Loic Foundation, a nonprofit dedicated to advancing research and treatment options for children diagnosed with the disease.

Because PKAN is so rare, large-scale funding is limited. Families often lead the charge themselves, raising money for research, clinical trials, and essential adaptive equipment not covered by insurance.

Nate’s parents recently hosted a Walk for a Cure, raising more than $10,000 toward a mobility service dog that would help with balance, falls, and safety, along with thousands more for PKAN gene therapy research.

Doctors and therapists have recommended several items that could dramatically improve Nate’s quality of life, including:

• A fully trained mobility service dog

• A medical bed designed for safety as movement becomes more difficult

• Adaptive equipment to help him eat, play, and stay engaged in everyday activities

Insurance does not cover many of these costs.

Still, Nate’s grandparents say the effort, even sleeping outside on the pavement, is worth it.

“He’s full of life. He has no idea that he has a terminal disease whatsoever,” Gregory Scott said. “He just runs around and plays like any normal kid. But it’s tough to watch for me, because I know he’s terminal. So hopefully medication slows the progression down and he lives a lot longer than we expect.”

The family hopes people who see their tent this weekend will stop, ask questions, and consider supporting Nate’s fight.

If you would like to donate or learn more about Nate’s journey, you can visit the link here to donate, or the social media link here.

And his family is doing everything they can to help make sure there are many more birthdays to come.